Tuesday, December 7, 2010
Today brings us 12 days away from Mikey's 7th birthday! I can not believe that my BABY is turning 7!! He has overcome so much--not only in these 7 years--but from day 1! My, oh my--I am so very proud of his determination and his drive to overcome everything!
The boys had their yearly check-up a little bit ago & both are doing fan-tab-ulous!! Our Pedi; who has been with Mikey since birth, couldn't say enough about how proud he is of Mikey. He was still very happy (and maybe a little suprised) that Mikey is still doing everything without any sort of aid. I love hearing it when we get told "he really is just like any other boy his age"--honestly that is music to my ears!!
There really isn't time right now for me to give a full update, but I promise I will soon.
Thursday, September 9, 2010
August saw many many changes in the lives of our little family. We sadly had to say good-bye for now to Cloe and Xander, as they had to go back home and ready for school. Both Xander and Mikey started Grade 1 this year (although Mikey is older by nearly a year; I held him back a year to give him a little extra headstart).
I also had my surgeries which is the cause of delay in updating. August 11th I had my revision done for my face and had an unexpected OR towards the end of August for something different :( In any case we all made it through the summer smiling and happy which is the most important thing.
Liam and Mikey began school on Sept 1st and Mikey is so excited to be in school full-time and most importantly, with Liam! This boy sure loves his brother ♥ There has already been a bit of upset with a new boy in Mikey's class (the other boy is brand new to the school). I hate teasing. I loathe it even more when it is my child at the centre of it. It's only a week in and already he's come home 3 days crying. I called his teacher yesterday and they were aware this was going on. Apparently they've spoken to the other little boy & I am happy to say Mikey came home VERY happy and said that "D" was not mean to him!!! Hopefully this is the end of it. It was heartwarming though that when the teasing (which got to the point of "D" pushing Mikey down to the ground on the playground--this after not leaving him alone about his hands) was happening Liam and 3 of his buddies came to Mikey's side and helped him to the playground supervisor. Liam and his friends told Mikey that anytime he has any problems that they would be there for him.
These friends of Liam's are so awesome that they don't see Mikey as Liam's little brother but as a cool little dude with awesome hands :)
August also saw Mikey NOT coming home one afternoon while he was at a neighbours house--they were in the garage planning a suprise that they were all completely unaware I needed more than anything that afternoon (after getting very upsetting news). I got called outside to see my awesome little dude riding his bike WITHOUT training wheels!! Nothing will ever bring joy to me as seeing Mikey cruising on his two-wheels!! Not to mention that he only began riding his bike at the beginning of summer because that's what Xander loves to do--so thanks to my little X he got Mikey riding!! I've got a video but I need to figure out how to upload it. I will treasure that moment forever. He now wants to do nothing but come home from school and ride his bike.
Yesterday after Mikey had his good day at school, he showed me his agenda book and I was suprised with his printing! They need to copy what the teacher writes on the smartboard each afternoon and yesterday it was "join us tomorrow at 5:30 for ice cream". His printing was completely straight and on the line and 100% legible! Holy smokes!! There is nothing wrong with his fine motor skills! I need to upload that picture too, but will do so when I'm at home.
It seems I've written a bit of a novel, and it wasn't even an update of our whole summer--but I must end now and get some work done.
Tuesday, July 13, 2010
I got final confirmation yesterday that Mikey is indeed in the Captial Ex parade to kick off our annual exhibition fair!! We have a meet & greet on the 21st and the parade itself is on the 22nd. Like I mentioned before, Champ kids (from War Amps) need to be six to be on the float & Mikey has been waiting patiently for this day to come!! I am so excited for him!
Last Friday, I was in awe. I met a family (the one who's mom is pregnant & found out her little guy will have a least 1 symby hand when he's born in August) and they have a very very rare familial case of brachydactyly type B (BDB) . This family is INCREDIBLE!! They've traced lineage back to at least maternal grandmother who was affected. The grandmother had 7 children 2 boys 5 girls. All 5 girls were/are affected. The 2 boys are/were not. The mother I met has a 14 year old girl affected and the most sweetest little 8 year old boy also affected. Early and multiple prenatal ultrasounds have shown the newest little boy to at least be unilaterally affected, but Mom's gut tells her it is bilaterally. This was the case with Mikey too. Docs were sure unilaterally, but I knew otherwise. I love mommy instinct.
Although language was a bit of a barrier (they are ESL with Spanish as main language), I had a great talk with this family. The daughter I noticed, was standing mostly, with her hands crossed under her arms. Now, being a 14 year old girl many years ago--I could understand that--I hope that was the case and not she was hiding. Mikey is involunvarily hiding his hands more and more often--moreso his left hand. Anyhow. The little boy ( I will call him M), whom I fell in love with, hugged me and we cried together. I see in his eyes little Mikey. M told me stories of how he hates when his family move because then he has to start all over (with the explainations, stares etc). He said that there is a girl from school this year who was particularly mean and would tease him often. He said though he has one very good friend who sticks up for him and tells the girl to leave M alone. M also said that just thinking about this little girl and what she does to him makes him cry still. My heart breaks so much for him.
M and Mikey played. They played and played. They played DSi. They played ball. They hit me with a ball more than once. They laughed. I saw M throw his head back and really laugh with my little Mikey--Mikey who has a language barrier all of his own and this little boy M would share stories and LAUGH LIKE LITTLE BOYS!!
We've never met another child/adult with Mikey's exact condition. I was so excited to meet another bilateral child & although their conditions are very different (I am so grateful that this family has answers as to why this happened--good ol' genetics) Mikey has a whole family more of people to look up to! M's mom is due on August 5th. I ask for kind thoughts & prayers that her labour and birth is uncomplicated and their new little guy is born happy, healthy & perfect! I can't wait to meet him!
After we were running so late for our equipment trial because Mikey was playing too much(!) we ran to our electronic meeting. We tried out only a few different options because we are waiting for actual appointment which will hopefully happen before Grade 1 starts. Mikey got to bring home an "Alphasmart" to trial for the summer. He's used this somewhat in class & although this tool is for more short-term usage, this will be a fun way to get him used to typing. He can use a regular keyboard, so unless his range of motion decreases I am thinking we will be able to avoid a one-handed keyboard. The tech and I also discussed iTouch and iPad, but obviously they are not very durable when it comes to children and though he'd be able to use one at home, I will not purchase him something like that until he is out of the "little boy phase"--mind you, I've just somehow managed to break the screen on my new touch cell phone so it could be that he takes after Mom and NEVER outgrows that!!
Well, time to get back to the "real world"! Talk to you soon.
(oh and suprise suprise, my surgery's been cancelled again)
Tuesday, June 29, 2010
There hasn't been too much going on, although for some reason Mikey has been a little more clingy and easily upset. Every morning I've woken and found him in bed next to me. Even when Liam is home (they share a room). I'm hoping it's just adjusting still from not being in school.
Mikey and I have an appointment on July 9th with his PT & OT to see firstly, another mom who is pregnant & found out recently that her unborn baby has a symby hand. Mikey is very excited to show her that he "can still do anything". I pray that he is able to put some of her fears and questions at bay. We then will be meeting with a specialist to try out different technologies to help Mikey with school. He will still be getting a laptop, but my main concern is they continue to encourage him to use both his hands as much as he can. If he tires or is not able to keep up with the workload, then the laptop will be brought in. It is most important though that he use his hands as much as possible. They've not been an impediment in anyway thus far and I think it's important that he maintain the incredible function he has now.
My surgery has been rescheduled (for the third time!) now for July 14th. Just like before, I will have 2 weeks off and in that time I am hoping to be able to update Mikey's blog. We will have a busy July, as Guy's kids will be coming to stay with us! Cloe is coming all the way from New Brunswick and we've not seen her since last August! Since fate didn't bless me with a biological daughter, I am forever grateful to have her in my life. She is the most teriffic "step-daughter" to me. She is also so amazing with Liam and Mikey and they are super-excited she's coming too (albeit I think she is Liam's first crush!). Guy's son Xander will also be with us and although we get to see him a little more often, it's great to see how well our three boys are coming along together. Everyone is very excited that they will see Mikey in the Capital Ex parade representing the Edmonton & area War Amps CHAMPS!!!
Hope everyone has a TERRIFIC Canada Day! Our boys will be decked out in matching outfits (as they always are for this birthday party!) and I will be sure to share pictures!
Thursday, June 17, 2010
Mikey, you've fought since the day you were conceived. We knew at only 9 weeks gestation that something wasn't right. Scans, scans and more scans. They became a weekly event for us. We still had no answers, but we had YOU. With all the uncertains we were to face, you FOUGHT. Your movement, kicks, hiccups, resting with your butt in the air pressing so hard on me, but I didn't care. I loved those moments and I will treasure them until my very last day. Baby, you will never realize the love & pride I have for you.
At 20w3d, you decided it would be a good idea to get out of your swimming pool--not a good thing little boy! When my waters broke, I was terrified. After all the tests, this was not supposed to be in the game plan! You and I got right comfy for 3.5 months worth of vacation on hospital bedrest. I will cherish those moments with you too. Little man, you fought-changed your mind-this outside world wasn't ready for you yet. Who'd ever have thought that our waters would reseal & we'd have to get induced!! you play by your own rules Mr Man!!
The moment Dr Mayo put you on my belly I grabbed you. I turned each of your little hands over in my hands. I kissed each little digit you had. I kissed your lips.your hair.your eyes. My baby, before that moment we still didn't know what to expect. You were so very perfect. I kissed each little pea you had, looked you in your barely open newborn blue eyes and told you your were PERFECT.
You've given me insight to a world I never knew before. I am so honored to be in the world I am now. You've opened my eyes to the world of being disabled, but able just the same :) You've shown me, and the whole world "WHO NEEDS 10 FINGERS"? I appreciate life and the little things in life with much more appreciation and love moreso now--thanks to you.
My son, here we are on the eve of your Kindergarten graduation. It's hard to believe that you've already done 2 years of preschool and now this. Baby, so many people-including your whole family-didn't know what to expect from you with school. How many adjustments we'd need to make. You've proven to all of us, that you can do anything and everything!!! Baby, last year I was so heartbroken when you brought home a form that you would be learning sign language in class. I literally heard my heart shatter and I called the school and lost emotions on them. I was so heartbroken that they would give this "insult" to us. At the time there wasn't a hearing impaired child in class (or the school)-it was just to learn--which is absolutley fantastic, but for a child with Mikey's limb difference, was this really nessessary?
Well my precious miracle, you proved Mom wrong again. And the doctors. And all your therapists. Mikey, you signed and spoke me the Hail Mary. My tears were tears of joy, pride, wonder. I love you Mikey--you keep reaffirming to me that life is good and to never take anything for granted. More importantly, you've made me the Mom I am today.
Liam and I are so very proud of you sweetheart. I can not wait to see you in your cap and gown tomorrow. xoxox
Tuesday, June 15, 2010
The following picture is a masterpiece, that I'm sure any mom would treasure (and have a few of these lying around somewhere!!) But for this Momma, my heart swells with nothing but pride:
(this first picture is Mikey's drawing of Heaven. He's drawn his Poppa Tom & Poppa Herman and a beautiful rainbow)
Friday, June 11, 2010
Mikey is doing well. He graduates from Kindergarten next Friday!! I am so happy beyond words that my little man is growing up and doing so well! I also spoke with one of his school OT's and she let me know that they've decided to go against using the standardized testing (Peabody) and score Mikey against the kids in his class!! This is HUGE!!! Since day 1 I've never understood how they can use those tests, because he'd be deducted for things like not using proper pincher grasp. I mean come on HE DOESN'T EVEN HAVE the digits required for that, so why do they fail him? It's not like he wasn't doing it because he didn't know how--he physically couldn't. Anyhow FINALLY this year his team agrees and my boy will be tested just like all the other kids. And really, it frustrates me too that (and I do know all the kids are watched/tested but Mikey is a bit more scrutinized) because he has this obvious defect he is constantly tested. I mean really, I know kids who have 10 fingers and still have fine motor delay (helloooo-Liam for one!). I hate the spotlight being on Mikey although don't get me wrong, I am very pleased that he is receiving screening. His OT told me too, that his printing is on par with some of his grade 2 peers!!!!
That's my boy-my hero!!! I have some pictures that I want to share--mostly to help other symby families see how Mikey does things; such as putting butter on his pancakes, twirling spaghetti and such. I have to figure out how to take the pictures off my old cell first!
I hope everyone has a great weekend and I will update next week.
Monday, May 31, 2010
My Heads Up resulted in me catching our family's very first NHL hockey puck. No, it wasn't the way that any family wishes it to happen though. I caught it all right, right in the face, underneath my right eye. I was rushed to the hospital and suffered from a broken eye socket, cheekbone, and a couple of other broken bones.
I don't want to get too much into it, as afterall, this is Mikey's blog, but I thought I owed an explanation as to where I will be. I am going in for another revision procedure--which periodically I will have to continue doing every few years. I know that it was an accident and that Mr Coffey didn't pick me out of crowd, but I do wonder if he ever wondered what happened to the little nine year old girl who's life he drastically changed forever (and not in a very good way unfortunatly).
Please think of Mikey and his favorite older brother Liam while I am recovering. I hate when they see me go through this. I greatly appreciate your patience while I am away and I promise to have wonderful Mikey updates when I am back in action!
ETA: There has been a last minute change of plans. I just found out that my surgery has been postponed for one week. So on June 8th, let's try this again!!
Tuesday, May 18, 2010
"The X-Finger® is the world’s first active-function artificial finger assembly designed specifically for partial finger amputees.".
I came across the X Finger by sheer luck. Mikey and I were at the 2009 War Amps seminar and in one of our meeting groups with other kids with a similar defect to Mikey's, one mom mentioned the X Finger. I was completely absorbed in learning more, because at this point, there is no form of functioning prosthetic fingers. I shot off an email to "the company" just to inquire more information. Since that July, I have been honored to call Dan Didrick my friend. At this point however, X Finger is not available for pediatric patients. But...Dan has made it a personal goal to see that this changes! You need to check out the website (also linked to the picture on the left side bar), or by clicking here -> http://www.didrickmedical.com/didrick/ . Dan and his crew were also the first place winners in The Perfect Pitch 2009! Currently they are working on securing funding & I am so very hopeful that everyone will see the need for this. As a mom to a bilateral symby child, being told that really there is no option by means of prosthetics is very heartbreaking. Especially when you don't know how your child's function will be. Yes, we are very blessed that even with the severity of Mikey's defect he is very highly functioning and at this point has never had a fine motor skill delay, we also know that there are certain things that may arise that could change this for him.
Please, take the time to just visit Didrick Medical's site, I am more than sure that you will be impressed.
Till next time...
Friday, May 14, 2010
Then she sees. She realizes. Then, here it comes...I just know the exact moment THAT LOOK is coming on. The mouth drop open, the eyes enlarge to size of dinner plates. SHOCK--see, THAT'S why THOSE MITTS WON'T WORK. Mikey starts crying--something he has NEVER done in public. "Why don't anything fit my little hands Mommy". At that moment, the sound of my heart shattering into a thousand itty bitty pieces was clearly audible. Right alongside the heartbreaking cry of my precious little PERFECT boy.
So, what's a Mom to do? Go to the next department store and look. But not before heading down the toy isle to find a suitable distraction because the place we are going, needs to go unnoticed by my super smart little man. Thank you Lightning McQueen, you've helped me in many a crisis. It's now do or don't time (insert duh duh duh piano sound effect here) I put on my super sneacky mom hat and manouver to the infant side (going through the "big boy" isle first of course). I park his cart and Mikey in all his McQueen glory can not see where I'm looking....the infant isle. Yes. I find a pair of mitts, not army, but really there is no selection for infants aside from pink, blue or different blue. Hmmmm which will it be? Size? 24 months--yes infant mitts. They didn't fit. They are too big. Hear that crash? That's just another piece of my heart falling. I find another blue and give 'em a go. They fit--mostly. I mean really why do you need all that material where fingers are supposed to go? Anyhow, success finally. The size 12 months. And yes, a little big. I can never explain the feeling of buying your perfect 6 year old a pair of 6-12 BABY mitts.
I need to learn to knit. I have a most wonderful online friend and all because of her, Mikey did get his knitted army mitts. for this season She even made them 'specially for Mikey--we made outlines of both his hands, sent perfect Nat some army yarn, a few weeks later, it was Christmas for Mikey!! Mikey got his army mitts!!! And they are not infant mitts--they are big boy army mitts! I will forever have a place in my heart for Nat, I can not explain the emotions of receiving something everyone may think is "just a pair of mitts". They are Mikey's special fit army mitts and although they won't fit him next year, we will be holding onto those mitts forever and a day. Mikey had real mitts.
On that note, I need to get a move on. Work work work....Till next time.
Wednesday, May 5, 2010
I would also like to know how everyone with a fancy blogger is able to put on the nice backgrounds--not the generic blogger ones. Hints anyone?!!!
I do have other blogs, but they are full of my nonsense chatter over nothing very exciting! I know this site too is very bare and still in the early stages, but if any of you are able to help me spread the word about it, I would be forever in your debt.
I am also hoping to not turn it into a blog about Mikey directly. I would like to be able to share his stories, pictures etc, but I also want it to be informative.
I still haven't had a chance to upload more pictures and videos because work has been very busy (we are moving hospitals next Wednesday) and I am hoping to have more free time after that is done.
Thank you so much for taking the time to visit.